A new survey finds that nearly half of HIV-infected teenagers and young adults don't seek treatment unless the disease advances, which can them at risk for dangerous infections and long-term complications. It is accepted that starting treatment as early as possible can go long way toward keeping the virus in check and prevent the cardiovascular, renal and neurological damage characteristic of poorly controlled HIV infection over time.

Those most likely to delay treatment until they had advanced infections were males, blacks and Hispanics, the paper inJAMA Pediatrics
found. Males infected through heterosexual intercourse, while far fewer, also tended to get to clinic for treatment at more advanced disease stages than homosexual males, which suggests this population may underestimate its own HIV risk. Public health campaigns focus on gay men, the group at highest risk for HIV infection.

Why did patients only show up after they have advanced infections? Obviously a few could be unaware of their HIV status but most had been diagnosed earlier but did not seek care.

The researchers analyzed records of nearly 1,500 teens and young adults, ages 12 to 24, infected with HIV and seen between 2002 and 2010 in 13 clinics across the country. Between 30 percent and 45 percent of study participants sought treatment when their disease had reached an advanced stage, defined as having fewer than 350 CD4 cells per cubic millimeter of blood. CD4 cells are HIV's favorite target and the immune system's best trained sentinels against infection. Depletion or destruction of CD4 cells makes people vulnerable to a wide range of bacterial, viral and fungal organisms that generally cause no disease in healthy people, but lead to severe life-threatening infections in those with compromised immune systems.

In a healthy person, the number of CD4 cells can range between 500 and 1,500 per cubic millimeter. HIV-infected people with CD4 counts below 500 require treatment with highly active anti-retroviral therapy that keeps the virus in check and prevents it from multiplying. Those with CD4 cell counts below 200 have full-blown AIDS.

Even though the U.S. Centers for Disease Control and Prevention recommend HIV testing for everyone between the ages of 13 and 64, many infected people continue to slip through the cracks, the investigators say, due to unwillingness to get tested, fear, stigma and clinicians' biases.

"Clinicians need to get away from their own preconceived notions about who gets infected, stop risk-profiling patients and test across the board," says lead investigator Allison Agwu, M.D., an HIV expert at the Johns Hopkins Children's Center.

One finding of particularly grave concern, the investigators note, was that patients with lower CD4 cell counts tended to have more active virus circulating in their blood and bodily fluids, which makes them more likely to spread the infection to others. Those diagnosed with HIV should start therapy early and be followed vigilantly, the researchers say, to ensure that the virus is under control, to prevent complications and to reduce the risk of spreading the infection to others.

"We have to become more creative in linking those already diagnosed with services so they are not deteriorating out there and infecting others," Agwu says.

Males and members of racial and ethnic minorities were more likely than others to seek care at more advanced disease stages, the study showed. Black youth were more than twice as likely as their white counterparts to show up in clinic at more advanced stages, while Hispanic youth were 1.7 times more likely to do so.

Boys and young men were more likely than girls to show up in clinic with lower CD4 cell counts. Males, as a whole, may be at higher risk for delaying treatment, the researchers say, because they tend to receive less regular care than teen girls and young women, whose annual OB/GYN exams make them more likely to get tested and treated sooner.